A new centre which will provide information and support to people with rare diseases has opened its doors in Nicosia.
The centre, called ‘Folia’ (or ‘nest’), has been created by the Cyprus Alliance for Rare Disorders in collaboration with the Bank of Cyprus and support from the health ministry.
“It is an innovative project, not only for Cyprus, but for Europe and the world,” Androulla Eleftheriou, president of the alliance, said. “There is nothing for patients which informs them about their rights and supports them outside the medical area. This is a major weakness which this centre addresses.”
For the more than 60,000 people with rare diseases in Cyprus this is an equivalent of the citizens’ service centres.
“This is very helpful because we are under one umbrella,” a woman who was present at the opening said. “Usually, when you have a rare disease you don’t fit anywhere.”
Elefheriou explained that people with such diseases need more than medicine, they need to be educated so they know what their rights are and what they can expect from the government.
“If you ask 100 citizens how they would go abroad for an operation, it is safe to say that 99 of them won’t know,” she added.
The support also extends to secretarial services, as the patients need to know how to write to the authorities in order to get their needs reviewed.
It is estimated that there are 6,000 to 8,000 different rare diseases in the world. An estimated 60,000 to 70,000 people in Cyprus are among the 30 million across Europe who are similarly afflicted.
Most rare diseases are genetic and include congenital abnormalities in growth, chromosomal monogenic syndromes, skeletal malformations, hereditary metabolic diseases, and hereditary cancers. There are also rare autoimmune diseases and childhood cancers.
The Cyprus alliance is a non-profit organisation founded on June 2, 2010 with the purpose of providing a unified voice to the patients in Cyprus.
‘Folia’ is located at 10, Terra Santa Street in Strovolos. It is open Monday to Friday from 9am to 5pm. For more info see www.raredisorderscyprus.com or call 22-203762